Assumptions about Consumption

I’ve been thinking about a number of assumptions that could have had unpredictable consequences for my ABI recovery. That doesn’t mean I’m being critical of the people who made the assumptions of which I’m making assumptions. Rather, I see it as a example of the type of life we’ve allowed ourselves to slip into.

It’s been some time now, going on three years, that I received a generous prescription of a controlled substance that I never really had a need for. However, there are reasons why I have it which incidentally has only partially to do with me.

Some time ago I had undergone a surgical procedure. It fortunately was a micro surgery procedure because the problem was diagnosed early on. It was assumed that my recovery would involve post-operative pain to some significant degree. Once the surgical procedure was completed I was given some meds for pain. Six hours later I was offered some additional meds for pain. Even though I mentioned that I was not experiencing any pain and indicated I didn’t need the meds I was encouraged to take the meds anyway. Being recently post-operative I didn’t have the presence of mind to decline. This being my first every surgery I was into unfamiliar territory.

Having a prescription in hand for a controlled substance did rouse my curiosity. A family member had filled the prescription for me before I realized it was a controlled substance. I wondered about trying one or two doses. I was curious about the feeling it would produce. There was a definite temptation to experience the effects. In truth it would be strictly for recreational purposes. But I could argue that I had obtained them through legitimate means. After considering the pros and cons I eventually decided against experimenting with it.

In the critical first few days following the operation I experienced occasional discomfort but on the whole I would say I experienced no pain.

Substance abuse stats

According to American Society of Addiction Medicine, 1.9 million Americans above the age of 12 have a substance misuse involving prescription pain medicine. Yes, the prescription I have fits that category.

Even if I had experienced a moderate amount of pain I would have decided against using the prescribed meds. The main reason I decided against the use of pain meds is because I was quite sure the potential side effects would be compounded by my ABI status.

Additionally after reading the five page information booklet accompanying the prescription I noticed that several side effects listed would complicate my recovery. (My family doctor once told me it’s not a good idea to read the whole list of possible side effect of any prescription drug. I care to differ as it’s my body.)

Assumptions

Acquiring and having this controlled substance involves a number of assumptions, both mine and the attending physician.

Assumption #1: With the high level of misuse of pain meds I would have expected a prescription to be offered only if I had reported a high level of pain that couldn’t be controlled by lesser drugs. The assumption was based on the expectation that I was a responsible patient.

Assumption #2: Having to contact the doctor in the event that my pain was intolerable would require an additional doctor’s consult and cause some delay in getting the required medication. The assumption was that this was streamlined for my comfort and benefit.

Assumption #3: Requesting a pain med prescription would have put additional demands on the doctor’s time. My assumption is that this was the main reason for the preemptive prescription.

Assumption #4: That I would be one of many patients who in the end would complain about the pain and demand something that would put me out of my misery. My assumption that most patients will request the pain meds.

Assumption #5: The prescription was given on the assumption that my likelihood of developing a substance abuse was considered very low to non-existent. Since I had never met the surgeon it is, in my opinion, assumption that the surgeon made while ignoring the statistics on pain meds addiction. This is my assumption about the very competent and capable surgeon who agreed to help me.

The Risk

Given the struggles I was dealing with at the time, the on again, off again pain and discomforts of dealing with ABI, I was a likely candidate for substance abuse. I had made a point of letting the surgeon know I was dealing with ABI rather than making the assumption that she would read it in my medical file.

What held me back from using the controlled substance was my awareness of the statistics on substance dependence in the general population. I did not want to gradually find myself with a challenge that would compete with my ABI recovery efforts.

However, the main reason I wasn’t interested in experimenting with the meds and risk becoming dependent on the controlled substance is that I was seeing gradual and noticeable improvement in my ABI recovery. Along with that I had a professional support team and a supportive family. These two factors gave me the will power that I could manage without a prescription.

Cashing in on the street value of the meds…. hmmm! Now there was something that wouldn’t affect me. Oh, wait. Not true. Actually, cashing in on the street value was only something I had jokingly suggested.

The Good Wives (Netflix) shows how quickly one can slide down that slippery slope.

Gleaning

Pushed Beyond the Margins

Gleanings at the edge of the field

The wheat fields waving…

… this land was made for you and me.

Woody Guthrie / The Travellers

Scouring the edges of the field

Gleaning the forgotten stalks of grain

Searching the margins of the crop

Food for tomorrow

Searching the margins of the field

The margins for the marginalized

A place for the poor

A foothold for the dispossessed

The margins offering potential

Where each kernel of grain

holds hope for tomorrow

able to produce eighty fold or more

Oh to possess such hope

The dream of abundance

Feeding an abundance of spirit

Dreams for a future

Gleanings for the birds

They neither toil nor spin

They have a role, a place

They are cared for unbidden

For the poor, entry forbidden

For the migrants access forbidden

The fatherless pushed beyond the margins

The dispossessed struggling to maintain their dignity

Pushed out of the margins

Beyond being marginalized

Margins for greater profit margins

The entitled controlling the means

The poor simply beholden

Forever indebted

Forever in debt

Pushed beyond the margins

Longing for a place

An ounce of compassion

Not the insult of pity

Longing to contribute

– Jasper Hoogendam (c)

When you reap the harvest of your land, do not reap to the very edges of your field or gather the gleaning of your harvest. Leave them for the poor and for the foreigner residing among you. I am the Lord your God.

Leviticus 23:22 (New International Bible)

Finding the Social Mode

Calming the Vagal Nerve

This is the first real break I’ve given myself since starting the Listening Therapy. This is the first real break I’ve given myself since the dramatic change in my ability to function. (See “Tiniest Muscle with Real Pull“)

My spouse and I took a four day mid-week camping trip. It was a well timed trip because the weather was perfect. We arrived with no issues with the drive. Though it took me an hour to feel oriented and get over the unfamiliarity of the place. I got myself oriented to my sense of place by focusing on getting the tent set up. I prefer to do it alone so I’m better able to focus. It’s less demanding as well as avoiding the cognitive demand of coordinating with a second person.

It was an extended break. By extended break I mean four days away from home with no daily routines or demands from my tasks and goals. Three days of mostly reading and a solo bike trip of 45 km on the fourth day.

Once the campsite was set up we got the rain shower that had been forecast. Sometimes the meteorologists are right. Other than the rain shower that greeted us shortly after our arrival, we had great daytime temperatures for swimming and great night time temperatures for campfires.

I spent most of the first 3 days relaxing, taking a short dip in the lake but mostly reading. I had enough reading time to almost complete two novels. The only exercise I got was walking to the facilities an inherent part of camping and enjoying a bit of unicycle riding. The latter usually earns me an applause or two.

I was surprised that I didn’t get restless after a long stint of reading. I was also surprised that I wasn’t nodding off to sleep while reading. Both of these were a change from what has been happening to me far too often.

The camping trip was a clean break from the demands and routines of being at home. For four days there were no chickens to look after, no garden to keep up, no household chores to do.

By the third day I felt well rested and caught up on sleep. It struck me that I was sleeping longer at night and not taking a nap during the day. That was an improvement from my usual routine. I generally hold to the notion that the more energy I expend during the day, the better I will sleep at night.

By the fourth day I was awake by 6 am. I had decided the night before that I would take a bike ride if I woke up early. By 6:30 I was on the road for a 45 km solo bike ride. It was the first bike ride this summer as my half acre garden had been dominating my day. Just over two hours later I was back at the campsite ready for a second breakfast.

Something Changed

My four day break seemed to change something for me. My first hint was my solo bike trip. It was different from all the other cycling I have done since my TBI in 2015. I had logged over 18,000 km in the past 4 years. This trip was different. As I was cycling I realized I didn’t feel the same urgency. There wasn’t the sense of frantic energy. I say ‘frantic’ for lack of a better word.

Over the past four years I have not been able to bike at a relaxed pace. Every time I got on a bike I would push myself. I remember specific times while biking from Vancouver to Newfoundland in 2017. If I had a difficult time on a particular morning my response was to bike with more vigor and energy. One day after wiping out on my bike I was determined to get moving again. My response was to pedal harder, to increase my pace. Those were just two examples of many other times of how I my body responds to small or medium setbacks.

In looking back on the situations where I experienced set backs it would be more accurate to say I was responding to the setbacks with frantic energy. With what I’ve learned in the past three months I would suggest that my frantic response is related to being in a “Fight of Flight” mode. The “Fight or Flight” mode had become my body’s or my brain’s way of responding to unwelcome sensory input ever since my TBI in 2015.

My awareness recently of recognizing my propensity for a “Fight or Flight” response has characterized a lot of activities I have done over the past five years. I somehow wouldn’t or couldn’t limit myself to doing an activity at a moderate level. Time and again I would push myself too hard only to find myself in a recovery mode for a day or more. I would receive reminders from my OT (occupational therapist) to plan for a more moderate pace. She would tell me to be satisfied if I completed two or three activities even if I thought I could accomplish five or six things that day. And I would acknowledge the importance of the advice.

Recognizing “Fight and Flight”

I learned recently that much of the neural fatigue was linked to my autonomic system going into a “fight or flight” mode as a result of misinterpreting sensory input from my environment. The autonomic system would not allow my vagal nerve to find a state of calm.

* (For a down to earth description of how the body responds to trauma and goes into ‘fight or flight’ mode see the video on The Polyvagal Circle. I think you will find Mathias Thimm’s 22 minute presentation an eye opening experience.)

Every time there was sensory input that put my autonomic system into “fight or flight” mode it would tax my adrenal system. Because the autonomic system works subconsciously I was not aware of what was causing a drain on my adrenal gland and therefore causing fatigue.

Since working through the SSP (Safe and Sound Protocol) the occurrences of “Fight or Flight” have reduced in frequency and possibly even in intensity. While there has been a change in the frequency of “Fight or Flight” responses, I’m starting to realize I needed to change my general response to situations that cause “Fight or Flight”. Without a change in behaviour my improvements will be limited.

Mindfulness

I have been coached to practice mindfulness. While much can be gained by practicing mindfulness, I first needed to develop an awareness of what was happening in order to make sense of what my body was doing. My four days of relaxing made me recognize a need to change my ‘go to’ behaviour of the past five years. I needed to let go of my ‘go to’ response of pushing harder when faced with challenges.

My focus is gradually, through intentional effort, moving towards responding with acceptance when faced with a challenge. Learning to choose to relax rather than fight the setback caused by unwanted sensory loading. I’m moving towards a sense of embracing the moment and give it time to pass.

As an example, my response to unwanted sensory loading from being in a car for several hours was to complete my trip with 30 or 40 km of cycling in order to help my recovery. In hindsight I don’t know how else I could have coped with the challenge at that time. Since working through the SSP Protocol the challenge of long car rides has almost completely resolved itself.

Since the camping trip I have managed to sleep longer each night. I have also been able to function with either no nap during the day or a 15 minute power nap. I was intentional about the 15 minute nap mid day when I was having a difficult time moving forward.

So here’s my new goal; sleep longer and sleep less often.

Listening Therapy

I continue to work with my Listening Therapist. The ongoing Listening Therapy is to reinforce the gains I have made. The intent is to continue to strengthen the Stapedius muscle so my ear sends clear signals to my brain. The clear signals helps to calm the vagal nerve, a key part of the autonomic nervous system.

The goal is to move my state of being from “Fight or Flight” mode to one of “Social”. That doesn’t mean I won’t go into “Fight or Flight” mode, but rather having the “Fight or Flight” response reserved for real situations which call for a “Fight or Flight” decision.

Tiniest Muscle with Real Pull (Part 6)

Training Cucumbers to Follow Their Line.

It is three months since I started my Listening Therapy with Rewired Learning. It has been three months that I have committed from thirty minutes to an hour a day working through a series of protocols.

Those who have read my first post in this series know the reason why I’ve been so diligent in following the Listening Therapy. The initial dramatic change was a significant factor not to mention my tendency towards tenacity when faced with challenges.

Speaking of tenacity. One of the challenges that was high on that list was cycling from Vancouver BC to St. John’s Newfoundland, two and a half years after my brain injury. Though the ‘cheering’ and daily support made that challenge easier than other challenges I’ve dealt with since my injury in January 2015.

Since starting the Listening Therapy I’ve noted various changes in my ability to navigate my daily routine. Having better short term memory, greater physical endurance, and improved focus and concentration are just some of the improvements.

Sleep: A Key Improvement

During most of my adult life I could fall asleep on cue. I could count on getting a full night of sleep unless other demands got in the way. Getting proper sleep has evaded me since my ABI injury in January 2015.

At one point in my recovery I was recommended to use the Four Square Breathing technique to help me get to sleep. The technique is intended to regulate and calm the autonomic nervous system. It calms the vagal nerve, slowing down the heart rate putting a person into a better condition to induce sleep. (I found practicing Four Square Breathing improved my lung capacity – not a bad idea during this time of COVID 19.

Some time later, on suggestion of my OT and recommendation of my family doctor I had signed up for a sleep study in November 2019. That was five months before starting my current Listening Therapy.

Sleep Study

During the initial five month since starting the Listening Therapy I have experienced some improvement in my sleep. The improvement translated into being better able to function each day. The main improvement was averaging an extra hour of sleep each night. With improvement in my sleep my daily endurance had improved.

Several family members have commented on the improvement in my daily functioning. My day time naps became shorter and sometimes optional.

Prior to starting the sleep study I would experience different sleep patterns. At times I would fall asleep rather quickly only to wake up within the hour and be wide awake for the next hour or more. It was like getting a power nap, but at the wrong time of the day. Not very helpful.

Other times it would take an hour or more before I would fall asleep. When that happened I would get up after an hour and read till I got sleepy. I would usually sleep on the couch because walking back to bed would make me wide awake again. I would often wake up early and be unable to get back to sleep. In hindsight, the night time and early morning wake up could best be described as a ‘startled response’. It’s as if the ‘fight or flight’ response for some reason would kick in at most inopportune times.

With the sleep study it was determined that I have mild to moderate sleep apnea. I was issued a CPAP machine. Once I became accustomed to the CPAP machine I was sleeping better and longer.

The draw back with using the CPAP machine was that I was waking up feeling zoned out and groggy. It was like my brain was reluctant to start working. It was like being unable to get out of my sleep mode. As far as waking up and alertness the pendulum had swung too far in the other direction. Not helpful.

Effect of Listening Therapy on my sleep

Once I started the Listening Therapy I was gradually waking up much more alert. About a month and a half into the Listening Therapy I was noticing that the early morning groginess was leaving me and I was moving into an area of feeling like I had a good night’s sleep. Despite the improvement with the use of the CPAP I was still napping on average once a day.

The longer I have been working with the Listening Therapy the fewer times I have been waking up during the night. The reduced frequency of waking up in the night coincided with the reduction in my ‘Fight and Flight’ responses. While the likelihood of causation is there, the correlation does not necessarily assume causation between Listening Therapy and fewer interruptions with sleep.

Sensory Overload

Since starting the Listening Therapy I have been able to better manage my sensory loading. My incidences of sensory overload has been reduced. Also the intensity of the side effects when dealing with sensory overload have eased up.

Prior to starting the Listening Therapy I would regularly experience sensory overload. I had worked with an OT (occupational therapist) for a couple of years to learn to avoid sensory overload. As the Listening Therapy contributed to calming my vagal nerve, the frequency of experiencing sensor overload and the intensity of the symptoms have reduced. Nevertheless, I need to be mindful of managing my exposure to sensory input that causes overload.

My sleeping pattern is the first thing that is affected when I experience sensory overload. Suddenly my sleeping time gets cut much shorter, going from six or seven hours a night to three or four hours a night. Along with experiencing shorter nights there is an increase in the number of naps and length of naps I need in order to get through the day.

During my recovery from sensory overload I’ve noticed my sleep time gets reduced because I get restless. I’ll wake up either because I’m restless or I’ll wake up and not be able to get back to sleep because I’m restless. The same restlessness shows up with my napping times. The naps will vary in length but I’ll wake and find myself restless.

The best remedy for restlessness is to get up and choose a physical activity that is repetitive. Since it’s summer, with gardening it is easy to find a task that fits that description; hoeing the beans, pulling weeds, tying the tomatoes, or training the cucumbers.

The longer I’m engaged in the Listening Therapy the better my sleep pattern is getting. Having moved from an average of five hours a night to seven hours a night is very encouraging. Waking up feeling much more alert is a definite bonus.

I was proud to clock a nine hour night recently. This happened after dealing with several short nights while recovering from sensory overload. Once I had been clear of the side effects I was able to enjoy a long and blissful sleep.

Prior to starting the Sleep Study it could take me more than an hour to fall asleep. I had a rule of getting out of bed and reading till I felt sleepy if it took me longer than an hour to fall asleep. This would usually result in sleeping on the couch, because walking back to bed would wake me up and I would have to start the process all over.

After starting to use the CPAP machine I would stay in bed even if it took me an hour and a half to get to sleep. Since starting the Listening Therapy it rarely takes me even a half hour to get to sleep.

Waking Up

I still experience challenges with waking up. Some of the Listening Therapy protocols leave me feeling like I had an extended physical workout. I will wake up in the morning feeling stiff and sore.

On the mornings that I’m feeling stiff and sore I find it difficult to work through my stretching exercises. The amount of effort it takes makes me feel like I’m suddenly 10 years older. Not a great feeling.

Once I would get through the stretching exercises I would be good to go. My endurance during the day would be fine. All would be fine until I stop for a break and had been sitting for twenty minutes or more. Then I would experience stiffness and muscle pain as I got up and tried to walk. I would have the same issues when getting up from a nap.

It took me awhile to see the connection between doing certain Listening Therapy protocols and the muscle aches and stiffness. In looking back on the improvement in my overall functioning, I would say, “No pain, no gain.” I’m willing to accept some of the downsides while working towards an overall improvement.

As I worked through some of the Listening Protocols, the changes, the improvements in my brain functioning would affect the rest of my body. That shouldn’t come as a surprise because one’s body and one’s brain are inextricably linked. Go figure. How could the one function without the other?

At this point in my Listening Therapy I think I’ve worked through some of the hardest adjustments. In the same breath I would say I have also seen my most dramatic improvements early on with this intervention. Now my focus is on strengthening and retaining the improvements. Once again having a better night’s sleep is a real blessing in this part of my journey of recovery.

Oh, how life looks so much brighter waking up to a summer morning after a restful and refreshing night.

(c) Jasper Hoogendam

Tiniest Muscle with Real Pull (Part 5)

Growing Climbing Bean Requires Planning

What does Memory Recovery Look Like?

Having recovered my memory in such a dramatic fashion has left me pondering various aspect of Memory. Pre-ABI, when my memory served me well I never paid attention to it. I happen to have excellent recall. I would remember names a month later after meeting a person for the first time. However, my memory for sequence of time was not always my strong suit.

There are so many different aspects to memory. But it is the aspect of memory that has improved my executive functioning that has been the game changer.

Getting my memory back has also given me some glimpses into how memory works. At least how it works for me. It has highlighted various aspects of how memory shapes one’s experiences and one’s relation to these experiences.

Waking Up

One would assume that one starts the day by simply waking up. Either the alarm goes off or in my case somewhere around 6 am I just wake up. If I’m in a state of agitatation due to sensory loading from the previous day I wake up at 5 am or earlier. If I’ve had a demanding day I wake up an hour or so later than usual.

Prior to my dramatic memory recovery I would wake up by opening my eyes. Nothing spectacular. However, in looking back my brain would still be half asleep. It would feel like my brain refused to take in much of anything in the first half hour or so. No I’m not a coffee drinker waiting till my morning fix kicks in. It was like my brain wouldn’t get started.

Now, when I wake up and open my eyes, my brain is immediately active. I notice that I’m think back on some of the highlights of the previous day. I’m thinking about the new day and what I hope to do. I find myself forming the initial plans for the day.

Since it’s gardening season I consider what needs to be transplanted, what area needs to be hoed or watered later in the day. Or whether things are fine and I’ll take a day to do something different. Finding myself making a general outline for the day is new and rather unfamiliar territory.

Prior to my dramatic memory recovery the process of thinking ahead or the casual planning just didn’t happen. I wasn’t even aware that it wasn’t happening. My brain just wouldn’t go there. It wasn’t a matter of just ‘telling’ myself that I need to make a plan. When I did make a plan I would forget once I got up. Something would distract me. It was a matter of ‘out of sight, out of mind’. So often at the end of the day I would comment on something that I had totally forgotten to do. It might have been a fleeting thought on waking or at some other point in the day and then it just faded without a trace.

What Has Actually Changed?

If you read my first blog on this series, Tiniest Muscle with Real Pull, I described the change following my first two hours of Listening Therapy. The Safe and Sound protocol that I was working through somehow, almost magically, brought back a major part of my ability to remember.

In fact I had fast tracked the Safe and Sound protocol. The intent was to listen for 30 minutes a day giving time for the necessary changes to happen. I covered the first two hours in two days. The four days would have given me extra time to have my body take in the healing effects of the Listening Therapy.

The Safe and Sound protocol focuses on exercising the stapedius muscle. That muscle is a critical link in the chain of links between the eardrum and the brain. By improving the muscle tone of the stapedius muscle, the brain is getting a more accurate interpretation of the sounds in a person’s environment. With poor muscle tone with th estapedius muscle the brain is getting sounds in the frequency range of Fight or Flight sounds rather than socially engaging sounds. With improvement in the sound frequency range the brain has room to do more of it’s normal or social functions. Receiving sounds in the frequency range that signals normal social activity the brain has less of a tendency to go into sensory overload or into a state of alarm.

The Black Hole is Fading

Once my brain was no longer jumping into Fight or Flight mode unexpectedly several times an hour, (not that I was consciously aware of it) my brain could actually pay attention and retain what I wanted to remember. In other words my autonomic system wasn’t getting hijacked several times an hour, creating fatigue and distracting me from my memoary and plans. In that way shutting down my executive functioning.

When I am in emergency mode, encountering Fight or Flight my brain simply reacts to what was happening in my environment. It leaves me with very little capacity to plan. When my planning is regularly interrupted only the simplest of plans work. Anything more complicated or multi-step such as problem solving gets derailed.

By regularly going into Fight or Flight mode I would very easily get distracted. If I was on my way to fetch something, and an alarm was triggered in my autonomic system, I would see something that needed attention and forget what I was planning to do. I would simply react and deal with what ever had my immediate attention. Needless to say, what I had intended to do was suddenly no where on the horizon. I would often not even be able to recall it if I tried. It’s like it disappears into a black hole.

Is There a Downside?

Living with a dramatic improvement of my memory does have a downside. Are you surprised? You might be wondering how something that spectacular would have a negative side.

I was asked a couple years ago when my sleep pattern was much more disrupted than it is now, what goes through my mind when I can’t sleep. The question seemed odd because while I’m lying awake nothing of any consequence really goes through my mind. Pre-ABI I never thought that was possible.

I realized that when I lay awake at night my mind was mostly blank. I did not think back on what happened during the day. My inability to plan seemed to run parallel with my inability to reflect on events and related consequences. There was no regret of what I, pre-ABI, would have considered to be bad planning. In fact I didn’t really get annoyed when I was lying awake. I just considered it inconvenient.

I dealt with the inconvenience with a simple rule. If I don’t fall asleep after being in bed for an hour I simply get up and read till I’m ready to fall asleep. If I wake up in the middle of the night and it takes me more than an hour to get back to sleep, I do the same things. I simply get up and read till I’m ready to fall asleep.

Since my dramatic memory recovery my night time waking experience has changed. I will now replay past experiences both recent and otherwise. Other times I’ll start planning what I hope to do in the morning.

Occasionally the ‘midnight rat begins to gnaw’ as some would refer to it. Reliving past regrets or decisions is back. Fortunately not too often. Since I’m once again able to plan, I’m also able to commiserate about plans that did not go well. I must say, that’s a small matter compared to the major benefits of improved memory.

Momentary Losses

The dramatic improvement in my memory still gets very easily disrupted. When I experience sensory overload, whether that is overload from cognitive demands, emotional overstimulation, or chaotic social settings, my working memory, my executive functioning shuts down. Suddenly I’m back to serious forgetting. Suddenly my planning isn’t happening, or it is happening very poorly.

It’s not a matter of having lost what I’ve gained. Once I’ve gone through two or three days of recovery and the sensory overload has cleared, my memory and executive functioning is back.

Reinforcement

My ongoing work with Listening Therapy is to reinforce the gains I have made. The goal is to get to a point where the sensory overload, be it cognitive, social, or emotional doesn’t happen or doesn’t cause significant set backs.

I continue to be directed by my Listening Therapist as I’m working through new protocols. Each new protocol is based on how I respond to the listening sessions.

Summary Thoughts

What I find fascinating about my memory recovery is my opportunity to reflect on how the brain works. Going through the changes makes me more aware of the Before and After contrast, Pre-ABI and present. That in turn gives me a glimpse of what has changed. After more than 5 years of adjusting to a ‘New Normal’ (which is not normal and never will be totally normal) I’m being once again reacquainted with much of the ‘Old Normal’ and seeing how it contrasts to the past 5 years.

About 10 years ago I read Lisa Genova, Left Neglected. Following a brain injury from a MVA the main character Sarah lost awareness of the left side of her body. Whatever was on her left side just didn’t exist for her. She did not know she even had a left hand. The brain could not comprehend that.

I now have a glimpse of what Sarah was experiencing. It wasn’t a matter of ‘telling’ her brain that the other half of the world did exist to her left. It’s not a vision issue. It’s just not part of the brain function. For Sarah, whatever appeared within her range of vision out of left field came as a complete surprise.

I compare Sarah’s challenge to a discussion on being totally blind. Being blind is not the same as being blindfolded. Being blind is not a matter of just ‘seeing’ black. If you are blind, I’m told, when it comes to vision there’s just simply nothing there.

As I go through differen stages of recovery I often wonder, “How many mysteries does the brain hold?”

Tiniest Muscle with Real Pull (Part 4)

I’ve been working with my Listening Therapist for a few weeks. It’s been a growing experience. While the initial dramatic gains were a great motivator, it takes diligent work to carry out the therapy protocols.

I’m finding it’s required me to make it a priority in planning my day. Even if I do the hour or half hour of listening late in the day, it’s still a priority. I’ve experimented with the time of day to see if that makes a difference.

I’ve generally chosen to do my listening in the evening since that’s the time of day that I’ve generally felt most calm. It’s the time of day that the challenges of the day, if I’m in a recovery phase, have the least bearing on me.

More than a walk in the park

Once I experienced the initial gains additional listening protocols have been set up to reinforce the gains I have made. As my ears and various parts of my brain are adjusting to the changes created by the Listening Therapy, the rest of my body has not been taking a holiday. The listening therapy has affected my body in a numerous ways, just as my original injury affected me in numerous ways.

It’s as if my body is going through a major reset after five years of adjusting to living with an ABI (acquired brain injury). The reset can be compared to a doctor having to reset a bone that has not healed properly. The process involves what looks like a setback in the healing process. Fortunately, as I outline below, the adjustments are much shorter and much less intense than the five years of recovery.

I have recognized seven areas where I have experienced a reset which has been followed by remarkable improvement.

7. Muscle Weakness

Over the past few weeks I’ve noticed that my level of strength has dropped off. I wasn’t aware of the change initially since I’m used to having bad days mixed in with good days. But the loss of strength has been quite consistent for a few weeks. I notice I’m not able to lift or pull with the same intensity that I am accustomed to.

At times the loss of strength would result in dropping something I thought I could lift. At least I didn’t break any family heirlooms. Other times I would need to use both hands when I otherwise could do the task single handed. And then there are some tasks I have put off because of the physical effort required. Even initially these issues weren’t worrisome as I’m used to experiencing unexpected physical changes.

One explanation I was given made sense to me. With my brain receiving signals through my ears of a more social nature, I wasn’t slipping into ‘fight or flight’ mode as frequently. The ‘fight or flight’ mode would be triggered by the autonomic system when the brain receives sounds in the frequency range that signals an alertness to danger.

The Listening Therapy is calming the autonomic system resulting in fewer transitions in and out of ‘fight or flight’ mode. This means my muscles aren’t in constant tension ready to react to alerts from the brain.

6. Headache

I was a few days into the listening activities before I took note of my headache. My headaches have varied over the past 5 years. Initially I was in constant headache mode. Only the intensity would vary. Since using over the counter medication didn’t alleviate the discomfort I decided it was best to leave it. Over time the headache became intermittent. At that point in my recovery I used it as a gauge to monitor my activity level.

After starting the Listening Therapy it did take me a while before I realized I was experiencing headaches on a rather consistent level. While they were low grade, the discomfort would become more noticeable when I got tired or wasn’t distracted by some activity.

Now, after about a month I feel like I’ve turned a corner on that front.

5. Vision Issues

Since starting my Listening Therapy activities I have been experiencing issues with my eye sight. I started to re-experience ghosting.

Ghosting is a condition in which images seem to have a shadow. When looking at black lettering I will see a grey shadow as part of the lettering. This is most noticeable with road signs because I know I’m looking at plain block letters. Other signage might have a shadow to create a three dimension effect. So I can’t detect ghosting as easily when looking at store front signs or lettering on vehicles.

When I’m experiencing ghosting lights can appear very different. Rather than seeing a pin point of light I will see an elongated light, sometime stretching horizontally while other times stretching vertically. When I have a severe situation of ghosting the light will stretch vertically and horizontally creating a Christmas tree shape.

4. Tinnitus

I have been aware of an increased frequency of experiencing ringing in my ears, also called tinnitus. Apparently this is not uncommon when working through the listening therapy. I had gone from dealing with tinnitus 24/7 for the first couple years following my injury, then intermittently and finally it seemed to be almost completely cleared.

The recurrence of tinnitus is expected to be temporary side effect of the listening activities.

3. Neural Fatigue

One of the benefits the Listening Therapy was expected to deliver is dealing with less fatigue. Since the ‘fight or flight’ triggers were being reduced there would be less cause for fatigue. (Let me just point out that physical tiredness following a strenuous physical workout is quite different. Physical tiredness is invigorating because it sends a good feeling through the body as well as building momentum for inducing sleep.)

Off and on since starting the Listening Therapy activities I’m finding myself dealing with fatigue more frequently. That is not surprising because the therapy is changing the way the brain is receiving sensory input. The changes are demanding on the brain.

When starting the Listening Therapy I was advised to reduce my other daily activities. Since I was in the middle of setting up the garden I have continued to do what needed to be done. Call me non-compliant on that level. The advice was for my benefit and comfort.

Very recently I feel I’ve turned a corner in this area as well. While having said that I don’t know whether I will hit another patch where my level of fatigue will increase for a period.

2. Emotional Sensitivity

I am experiencing a higher level of emotional vulnerability. Hearing of hurtful experiences has once again made me more easily prone to tears. As the Listening Therapy opens up different areas of my brain, sensitivities from the past will influence my daily functioning.

This increased emotional sensitivity comes during a week when “Black Lives Matter” is receiving significant media coverage. I’m confronted with the hurt that surrounds this matter whether it’s video clips, news articles, radio talk shows or documentaries. It’s the personal accounts and the long term affects that hits me hardest. While I want to be better informed I know I need to ration my time and counter balance my day with other topics.

1. Heat Exhaustion

The first summer after my TBI it became apparent that I could not handle the heat the way I have other summers. I needed an air conditioner just to exist or at least if I expected to be somewhat comfortable. I am curious how the Listening Therapy will affect my tolerance for hot weather. I’ve seen some indicators that there is potential improvement. I’ll have to wait till the weather starts to heat up in July to find out more.

On Reflection

While the listening activities are enjoyable, the Listening Therapy is not a walk in the park. I find the music enjoyable with a wide selection of classical composers. I particularly find the Gregorian Chants enjoyable. They give me a sense of grounding with the resonating overtones. They remind me of my tendency in the past five years to slip into humming when my body was moving into sensory overload. The vibrations set up by humming I found out recently works because it calms the vagal nerve.

I do prescribed physical exercises for fifteen minutes, as part of the Listening Therapy, during most of the daily one hour listening sessions. Outside of the fifteen minute activity the Listening Therapy seems for the most part to be a passive activity. Meanwhile my body is working hard as it absorbs the sounds and makes healing changes in my vestibular and cochlear areas of the middle ear. As the ear is being conditioned to find a proper balance between air conduction and bone conduction my body is adjusting to the changes as the improved quality of the sensory input reaches my brain.

The Listening Therapy is a personalized series of applications using the Tomatis Method. This method provides a natural approach to neurosensory stimulation. The method was developed by Alfred Tomatis to improve people’s motor, emotional and cognitive skills. In my case the emotional and cognitive challenges have been the most persistent following my TBI (traumatic brain injury).

The Tomatis Method is intended to improve the listening potential of the brain. The effectiveness of the method is based on the understanding that 80% of the brain’s stimulation is connected to the ear. The Tomatis Method has been refined and improved on since the 1950’s.

The Tomatis Method recommends a rest period of a few weeks after completing 18 hours of Listening Therapy. This for me speaks to the profound changes the body; the brain, the ears and the rest of the autonomic system is adapting to. The rest period is an opportunity for the natural healing to take place following the momentum created by the Listening Therapy.

How I Got to This Point

Within a couple months of my TBI, my daughter directed me to two formative books by Norman Doidge. The books deal with the idea that following a brain injury one can experience dramatic healing. He demonstrates the amazing potential for the brain to heal. He uses the term ‘neuroplasticity’ to label the process the brain goes through. The first one I read was “The Brain that Changes Itself”. The second book is “The Brain’s Way of Healing”.

While I believed that Norman Doidge’s idea that the brain can be healed I did not know where or how to begin. That started to change for me about a year ago. A friend directed me to an article of a 51 year old male who had sustained a TBI through a MVA (motor vehicle accident). His challenges very much overlapped the challenges I have been dealing with. I started to inquire about a therapist who could set me on the path of healing.

Eventually I found a Listening Therapist, also known as a Listening Consultant who was prepared to work with me. The Listening Therapy is based on the Tomatis Method, designed to assist children with learning issues. It was also designed to assist children on the autism spectrum. Using the Tomatis Method to provide support for people with a TBI is a more recent application of the method. The Tomatis Method coincides with the idea of neuroplasticity developed by Norman Doidge. I had found the catalyst, the intervention I needed to affect the changes that could make neuroplasticity a reality for me.

In various ways my Listening Therapist and I are working together to design and refine the protocols based on the feedback I provide. I’m finding myself on a journey that I had never imagined. I must admit, it is one exciting journey.

The journey is reflective of gardening in the sense that it all starts with a ‘seed’ of an idea. Given the right conditions, and finding the right environment seeds will burst with growth. Given the proper care and making the appropriate adjustments plants will grow and in due time bear fruit. I find it an interesting coincidence that I’m working through the therapy as the same time that I am developing a half acre vegetable garden, a garden interspersed with some flowers giving the practicality of growing vegetables colour and character.

Tiniest Muscle with Real Pull (Part 3)

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St. Clair River near Corunna

The Benefits Keep on Coming

What else has changed following my foray into Listening Therapy? My curiosity was once more whetted recently as I completed a very different road trip.

Having experienced significant improvement from the Listening Therapy I have been eager and curious about the extent of the changes in my daily functioning. Since I have been social distancing, I have various activities that are on hold.  So I couldn’t just try out some of the pre-isolation type activities.

Life has been more predictable with social isolation being imposed.  In many ways the demands to exercise social distancing  has drastically reduced my incidents of sensory overload.

The first improvement that I experienced from the Music Therapy was seeing a dramatic improvement in my short term memory , and the resulting  improvements in my executive functioning, I keep wondering what other positive changes I’ll be seeing.

Imagine a Road Trip…

For the past 5 years road trips have been a real challenge. In 2016 I managed a road trip to Nova Scotia and PEI. A 5000 km road trip. Each day when I was on the road I limited myself to 300 or 400 km with a lengthy recovery break every 100 km. A few months back when I found out about vestibular ocular dysfunction I was able to put in some accommodations that reduced the negative affects of road trips.

While accommodations are helpful, they don’t get at the heart of the problem. The accommodations can be a nuisance but at least there is the benefit of an improvement in my quality of life.  My main accommodation with driving or being a passenger was wearing wrap around sun glasses. That in itself is not a disruptive accommodation. Even with a couple pit stops I still needed some recovery  time when I got to my destination.

A Game Changer

My most recent road trip was about 450 km. I was able to drive the whole distance with one short 15 minute pit stop to stretch my legs. The whole trip took me 5 hours. I chose some secondary roads to make part of the trip calmer. I had snacks and drinks on hand for the trip. I did chose to use dark wraparound sunglasses as an accommodation. The sunglasses was to give me a bit extra peace of mind. (I might forego them for the return trip.) I arrived at my destination in fine form. I experienced no heightened level of sensory loading.

On arriving I did take a one hour nap. In hindsight needing the nap was not really from having my TBI side effects from being on the road. It reminded me more of the kind or weariness that comes from being on the road on a hot day. It was 35C with the humidex up at 41C.

This trip was in sharp contrast to the routine that I’ve gotten used to over the past 5 years. The routine had included switching off driving with my spouse every 100 kilometers, taking 2 or 3 breaks of 45 minutes to an hour and a half, and needing a day or more to recover after arriving at my destination. There were times it would take me 4 days to recover. Often that would be in time for the drive home.

What Improvements are Possible?

This recent road trip experience makes me curious as to what other benefits I will experience from the Listening Therapy. The stapedius, being the tiniest muscle in the human body is like “The mouse that roared.” What else can that mouse change?

There is one question that I have wondered about but won’t be able to answer. It is now a little over 5 years since my injury.  My injury happened in January 2015. If I had started the Listening Therapy a year or two after my injury would I have experienced the same dramatic improvements? Would the improvements have been more gradual?

What prompts me to ask these questions is that there is what is called spontaneous healing following an injury. However, in my situation my ability to function gradually declined in the first couple months following my injury. My inabilities continued to increase before I started to see some spontaneous healing.

Regardless, whether the Listening Therapy would have had a different trajectory in my recovery, I’m am so thankful for the improvements that continue to surprise and fascinate me. I would never have asked for this kind of improvement for fear of disappointment. Why would I ask for something that I didn’t think was possible?

During my career as an educator I’ve had sessions with my staff where I urged them to dream big because you will be surprised what is possible. So that leaves me with another question, “Why didn’t I take up my own challenge when it comes to finding healing from my ABI?”

Post Script (four days later)

I drove home 4 days later. I wasn’t sure how well the return trip would go. If there’s one thing living with ABI has taught me is that no day is predictable.

I left for home shortly before noon. It was a rainy day, with cooler temperatures. Took two pit stops of about 10 minutes each. Lost about a half hour in traffic driving through the metro area in the late afternoon. Even though the sky was overcast and raining at times, I found the sky too bright. I wore my wrap around sunglasses for the whole drive.

I arrived at home five and a half hours later in fine form. I did not need a recovery time. Instead I went straight to my half acre garden to see what had happened in the past four days of warm and wet weather.

Even though much had sprouted, the weeds were still very manageable and I felt satisfied that all was good. I felt taken care of.

We are Social Beings

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Isolated From Family

My recent posted about how I’m benefiting from Social Distancing though it does come with some significant down sides. Even though my days have been more predictable and I am generally operating well within a manageable sensory loading level, there are parts of my life that are sadly on hold.

Unfortunately, the downside is quite significant. At any other time it might not have been as troubling.

An Aging and Ailing Parent

About two months before my mother’s 92nd birthday, she ended up in the hospital. By the time the COVID 19 restrictions had shut down hospital visits she had been dealing with a seizure. This has made getting in touch with her very difficult.

My only contact with her is by phone. She has a cell phone. In her late 80’s she learned the basics of using it. Well to be candid, she learned to use the phone and address book. It took quite some time for her to start texting. She only uses texting with one close friend.

A key drawback in staying in touch with her is that she is no longer able to answer the phone herself. So, I need to time my call when a nurse or someone else happens to be in her room. The nurse or other personnel will pick up the phone for her, put it on speaker phone and leave the room.

There are days when I’ve dialed several dozen times and have not been able to get through. I’ve learned that meal times are generally the best time to get through. However, I think they shift the meal times depending on how busy things get on the ward. It’s taken some persistence to say the least even so there is no assurance of actually getting through.

The real challenge is helping my mother understand why she is not able to have visitors. This is the part that is most difficult. The loneliness that sets in is unfathomable. She is no longer able to read. She no longer does needle work or crocheting. All I know is that she passed much of her time in prayer. It’s amazing how despite her situation her prayers are ones of thanksgiving and gratitude.

Besides not being able to visit her, I am also not really sure what kind of care she is getting. I met several of her care team before the COVID lock down and was pleased with the team. Without being there I don’t know what is being inadvertently overlooked. Someone had brought in a CD player for her but the last I heard it has gone missing in the process of changing rooms. I’m not able to step in and find some remedy. And then there is the small things that can make a big difference in having someone feel comfortable and cared for.

Meanwhile I do the best I can. I am thankful that she had not yet been moved to a long term care home given the track record of some many of them.

Recently my mother tested positive for COVID 19. I am thankful that she is asymptomatic. When she was retested two weeks later she once again tested positive but remains asymptomatic. I guess she’s had 92 years to build up her immunity. Yes, I hang onto little blessings.

My one hope for her is that she will one day be able to visit with my father. I can’t imagine being married for 69 years and than have virtually no contact for over two months.

New Granddaughter

My other drawback with the Social Distancing is that I have not had a chance to visit my fourth grandchild, born in April. I’ve seen pictures of her. I’ve had video conference contact. There is nothing that can replace sitting with a newborn grandchild and dreaming about the life that lies ahead of her.

The new normal will mean that things cannot be done as they were in the past. We need to find new ways to share as family and remain in contact. Whatever new and novel ideas that might arise, as necessity is the mother of invention, nothing can mean as much as the ability to reach out and touch. There is no substitution for a hug and looking someone in the eyes as you sit with them.

That is two of the significant drawbacks of living with Social Distancing. There are many minor inconveniences that I can get used. A restricted personal routine is not that major in the grand scheme of things.

At this time all I can do is pray and look ahead with hope and a fair bit of longing.

What’s the Deal with Short Term Memory

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Favourite Games as Kids

Having a major improvement with short term memory is a strange feeling. I have lived with short term memory challenges for over five years. Since my ABI (acquired brain injury) I have experienced very little improvement in this domain. It’s a strange feeling to listen to something while trying to remember it only to have it disappear a few seconds later. While making a list is fine when planning a few errands there are so many situations where it’s impractical to make a note. Though walking across the house and forgetting where I was going or why is also very impractical.

I’ve used various techniques or prompts to help me remember things. That takes effort and persistence. It doesn’t come naturally so it’s something I have to try to remember. (Talk about a catch 22.)

20200518_105648Loss of short term memory invades each day in so many ways. It goes beyond losing track when I’m being given too many instructions. It goes beyond forgetting why I walked into the basement or the bedroom. If it’s late at night and I’m tired I usually don’t forget why I walked into the bedroom. The loss of short term memory has almost everything to do with often not achieving what I set out to do that day.

I experience some frustration with short term memory failing, but it is something I’ve learned to live with. When my expectations are lower, my frustration is lower.

With having short term memory challenges, many of the events or details of events of the past five years have not become part of my long term memory. So often I simply say, “I don’t remember.” That is often my response when someone say, “Remember how we…”, or, “Remember when we…”

A Surprise Gift

Getting short term memory back (through listening therapy) doesn’t seem like a big thing at first. Yes, the initial realization was exciting. Yes, it is less frustrating. Yes, I do feel more productive. Getting it back in such a dramatic fashion helped me realize many benefits that would otherwise not have been as obvious.

Having my short term memory improve by about 80% is quite dramatic. What is strange is that the improved memory is not spectacular. By that I mean, having good short term memory is something I’ve lived with most of my life so what is a dramatic change is really like returning to normal. Normal isn’t dramatic. It’s just life as I have known it for so many years.

20200518_105841Getting short term memory back affects so many things in my daily routine and activities. Getting it back so suddenly made me very aware  of what changed in my day. Short term memory encompasses so much of what we do and who we are. The benefits move way beyond being much better at playing the game Memory where one needs to find matching cards in an array of over 120 picture cards. Some interesting ones that are easy to remember, some bland ones that can be confusing. But remembering the location to make the matches is the real challenge.

Remembering details

Short term memory is about noticing things in passing and being able to recall. In the past week I find myself replying to questions with, “Yes I saw that over in…” In my wandering about the house, the garage, the outbuildings, and the yard I am remembering so many details. Previously I might remember having seen something but for the life of me I couldn’t remember where or how long ago I might have seen it. Not very helpful.

Carrying out a project

While working on a project I regularly put down one tool and pick up another. I use some hardware or other supplies and set it down. The amazing change is that now when I need a tool that I put down ten minutes ago I can usually find it back without going into a ‘search and rescue’ routine before being able to use that tool. I can remember where my various supplies are even though I have things stored in the garage, the basement, or in one of three out buildings. (Having everything under the same roof would be better but I don’t have such luxury.)

Planning

Without a properly functioning short term memory it is very difficult to plan. Planning requires remembering detail. It requires remembering the sequence of tasks to reach the goal. Plus, planning kind of goes out the window when too much time is spent on ‘search & rescue’ of missing tools or supplies.

Taking Risks

I have had a few too many situations where I was not able to properly see the physical risks involved. One possibility is failing to note details. Not being fully aware  of my surroundings. For example, failing to notice that a ladder is not properly set can increase the risk of falling. Hitting my head on a tree branch was a serious setback that resulted from not being aware of my surroundings.

Other times it’s not being able to look ahead, kind of like failing to plan ahead and see what might go wrong two or three steps later.  I’ve experienced some mishaps which left me saying to myself, “Now why didn’t I realize this was a bad plan.” Now I’d say, “Because there wasn’t a fully worked out plan.” A common mantra is “Failing to plan is planning to fail.” It’s no different with being unaware of failing to plan.

Focus and Attention

20200518_105739While dealing with short term memory issues I would often find myself getting sidetracked. Either I would get sidetracked because I forgot why I was headed to a certain area or I would spend so much time looking for something that I wouldn’t get back to the activity I was engaged in.

With my focus interrupted I would inadvertently start doing a different activity. It might be a simple thing like setting a few things aside that were in my way.  Before I know it I’m reorganizing the whole closet or the whole room.

When you have short term memory challenges what is right in front of you is most real. So if there’s a mess in front of me then that gets attention. Unfortunately with short term memory challenges that doesn’t mean the new activity will be completed without some other interruption.

Problem Solving

While my loss of ability to problem solve has been a real disappointment, I am not sure how much that might have improved. The lack of problem solving abilities over the past 5 year seems to be from having a combination of not being able to bring enough details together as well as having challenges with mental flexibility. I think it might also be linked to difficulties with  planning and anticipating outcomes.

Only time will tell as situations arise whether I’m experiencing an improvement in problem solving. Even if it’s not as dramatic as some of the other improvements related to recovering short term memory.

Executive Functioning

The biggest casualty of short term memory loss is executive functioning. Executive functioning is the ability to pull it all together; noting details, staying focused on the task at hand, planning the day or the steps of an activity, and not missing important things like tracking, time, deadlines, or routines.

To  suddenly find my executive functioning improved by about 80% was a real eyeopener. It made me realize more clearly what I’ve been missing for over 5 years. The day the change dawned on me I was finding myself so much more productive. I wasn’t getting distracted. When I needed something I knew where to find it and hardly missed a beat continuing on my activity. I found myself thinking ahead to what the next step would be and what tools or supplies I needed.

I can’t put into words the joy, the sense of fulfillment, the pure pleasure of doing the activity, seeing the progress. It was something I had decided long ago I would no longer be able to achieve.

Grieving Loss

Grieving the loss of an ability is setting a lower bar for oneself. As much as I know I needed to do that as part of accepting my ABI, in many areas I have been slow to do that. As I kept remembering what I was capable of doing, I just couldn’t bear to put that behind me. I built our 1500 square foot house some thirty years ago with help from family and two trade’s people. After my  injury I I couldn’t even build a 100 square foot out building without having real challenges.

I find it hard to grieve a loss when it’s a sudden loss. It’s easier to accept losses that happen over time. I can’t run as fast as I once did. That’s fine and acceptable. I don’t have the same endurance playing soccer as I once time. That’s fine and acceptable. I find the sudden loss of certain abilities difficult because it’s like someone is telling you to consider yourself 10 years older over night.

Recovering a significant part of my short term memory is like welcoming a friend back. It’s like enjoying a nostalgic moment that keeps repeating itself time and time again. If that doesn’t put a smile on my face, not much will.

Tiniest Muscle with Real Pull (Part 2)

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Street Art – Kingston, Ontario

From Euphoria to Setback

My introduction to music therapy started with a major break through in my ability to function on a daily basis. I was aware that once the first phase of my therapy was completed the improvements would have to be reinforced by going through several follow up protocols.

In looking back on the first phase of my music therapy it looks kind of like ‘beginner’s luck’. Beginner’s luck when learning a new game gives you a taste of what the game feels like. However you can’t become a pro in one day and expect each game to go great. But if it gave you the ‘bug’ you’ll stick with it.

That is kind of how my introduction to music therapy with the Safe and Sound Protocol (SSP) seems like. The gains are real and I continue to enjoy the improvements with my short term memory and executive functioning. However I need to follow it up with additional music therapy to reinforce the gains that were made. I can’t expect a quick fix even though I experienced a great start. Despite experiencing a setback, the gains have not been lost.

Not only did I enjoy the euphoria of the initial benefits of the SSP, but more importantly it showed me the amazing power and potential of Listening Therapy.  Anything that has such profound power needs to be handled with skill, care and diligence. The pre-consultation of administering the Measure of Foundational Ability assessment is where the therapists applied the skill of planning the sequence of therapy protocols.  The more care the client takes in noting and documenting the neurological and physiological changes that happen, the better the therapist can manage and direct the treatment. The diligence and timely oversight provided by the therapist helps direct the therapy toward maximum effectiveness.

Intensive Listening System

I was three days into the iLS (Intensive Listening System) Sensory Motor protocol of my therapy when things fell apart for me. On day three, about three hours after my session a persistent headache set in. In addition to that I was experiencing tinnitus, something I have been clear of for about a year. As the day progressed my fatigue became progressively worse.

By early evening my headache had cleared and I went ahead with the second half of my iLS therapy session. By late evening I had a noticeable headache. Three hours into the night I woke up from a nagging and growing headache. After being up and about for an hour I went back to bed and manage to sleep a few more hours.

When I awoke the next morning my day did not begin bright and clear for me. My headache became more pronounced. My level of fatigue was unusually high. I was emotionally very vulnerable and easily found myself in tears. When I stepped outside I noticed my eyesight was giving me trouble.  I was experiencing ghosting (sometimes wrongly referred to as ‘double vision’). As the day progressed I was having cognitive challenges. Words would escape me and create noticeable pauses when conversing. Putting this altogether I realized I was dealing with an all to familiar case of significant sensory overload.

I had not dealt with serious sensory overload in quite some time. I had definitely not experience anything like that since social distancing was imposed almost two months ago. So this was an unexpected and disappointing turn of events.

What’s Going On!

I was disappointed with the setback. Since I had experienced the potential of the therapy, I was not inclined to throw in the towel. I shared my observations with my Listening Therapist as I was keen to understand what went wrong and what needed to be done differently.

The intent of the iLS  Sensory Motor phase, that I had been doing was intended to gradually add Bone Conduction into my listening mix. The plan was to start off with most of the sound coming through by way of Air Conduction and a small percentage of the sound coming through by way of Bone Conduction. The intent was to have my ears and brain slowly adjust to a proper balance between air conduction and bone conduction. (An explanation of the importance of a balanced between AC and BC is in my previous blog.)

The first Sensory Motor session was designed to have only about 6% of the sound come in by Bone Conduction. With each session the Bone Conduction would be increased an additional 6%. On day three things went off the rails for me. I went through a two day recovery. Something that I have not had to do in quite awhile.

I don’t think it’s a matter of “no pain, no gain.” The music therapy protocol is customized for each person’s particular needs. No two people are alike. This therapy is used to serve people with emotional trauma, physical trauma and conditions like autism or learning difficulties. The protocol is different for each type of need.  Within each type of need the program is customized for each person.

Redirection

By the third day I had almost completely recovered from my sensory overload. The cognitive overload was no longer leaving me stuck for words. My tinnitus had cleared. My energy level of back to normal and the ghosting had cleared. I was left with some residual effect of the headache. I was ready to move on with a modified protocol.

The focus of my therapy was adjusted. The goal of balancing Bone Conduction and Air Conduction is on hold for now. The current program is to first deal with a balance between the inner acoustics of the ear’s vestibular and the outer acoustics of the cochlear and middle ear muscles. The program involves working out a delicate balance between the inner acoustics and the outer acoustics.

The iLS Sensory Motor program that I stopped using had too much bass or low frequency sound input. It will take some time before I am ready for the Sensory Motor protocol. It was the amount of bass or low frequencies sounds that I’m not ready to handle.

I am now dealing with the Concentration and Attention phase of the iLS program. I will need to decide how much Bone Conduction I can tolerate. It might be best to work with zero Bone Conduction for the time being and slowly introduce it as my body responds positively. The Concentration and Attention protocol is intended to strengthen the muscles in the cochlear of the middle ear.

I’m hopeful about the progress. I also learned the importance of doing the Listening Therapy in a comfortable, friendly and safe type of space. A key part of the program is to move my autonomic system away from the Fight and Flight response to sounds in my environment. For me, an added part of feeling safe is knowing that my therapist is closely monitoring my progress and addressing my challenges promptly. This helps with the relaxation while listening and letting the music do it’s magic.

Unlike most learning where you are expected to pay attention and take in information, the music therapy is different. With music therapy you don’t need to be focused or attentive. The main expectation is to be relaxed and comfortable.